TTTS Awareness: What you need to know

December is TTTS (Twin-to-Twin Transfusion Syndrome) Awareness month, and today is World TTTS Awareness Day. TTTS is a disease of the placenta that can affect identical twins who share one placenta. The babies themselves are healthy, the issue is with the placenta and the circulation of blood between the babies and the placenta. (More about TTTS at the bottom of the post). I have shared our experience with TTTS with our boys previously. For today I want to focus on what you can do to help, and what you need to know if you or someone you know is pregnant.

An ultrasound is encouraged within the first three months to determine whether there are multiples, and if so, whether there is a shared placenta. TTTS only occurs in identical twins with a shared, monochorionic placenta. Monochorionic means one placenta and one outer sac, and there can be either one or two inner (amniotic) sacs. Twin pregnancies can be any of the following:

Dichorionic / diamniotic (two placentas, two amniotic sacs)
Monochorionic / diamniotic (one placenta, two amniotic sacs)
Monochorionic / monoamniotic (one placenta, one amniotic sac)

Once it is determined that there is only one placenta, extra precautions can be taken to monitor the pregnancy and watch for any potential issues.

From the TTTS Foundation website, here are the 15 most important questions for parents expecting twins to get answers to (the link has a more detailed explanation for each question):

Confirm at First Ultrasound (preferably by 10-16 weeks)
1. Is the placenta monochorionic?
2. Are the babies the same sex?
3. Can you see the dividing membrane?
4. Is the placenta anterior or posterior?
5. Do the cords have 3 vessels or 2?
6. Are the cords fully attached to the placenta?

Ask at Weekly Ultrasounds (Starting at Week 16 to Delivery)
7. What is the largest vertical pocket of fluid for each baby?
8. Can you see the bladder of the donor baby?
9. What are the weights of the babies in grams? (every 2-3 weeks)
10. Are the dopplers normal for both babies?
11. Is the heart of the recipient baby enlarged or thickened?
12. Does the recipient baby have hydrops?
13. What is the measurement of your cervix, is it long and
closed or thinning or dilated?
14. Is the smaller baby growing at the same rate?
15. What is the fundal height?

And for those who may not be familiar with TTTS, here is an overview, also from the TTTS Foundation website:

What is TTTS?
-Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.

-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.

-The common placenta may also be shared unequally by the twins

-The events in pregnancy that lead to TTTS are all random.

-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.

-TTTS can happen to anyone.

And from the Fetal Hope Foundation website:

TTTS or Twin-to-Twin Transfusion Syndrome is a disease of the placenta. It affects pregnancies with monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby, the recipient twin, gets too much blood overloading his or her cardiovascular system, and may die from heart failure. The other baby, the donor twin or stuck twin, does not get enough blood and may die from severe anemia. Left untreated, mortality rates near 100%.

The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor) to the other twin (the recipient). The donor twin develops oligohydramnios (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydramnios (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, and/or preterm (early) labor leading to miscarriage of the entire pregnancy.

Some general treatment approaches consist of using laser energy to seal off the blood vessels that shunt blood between the fetuses. Because the surgical approach is via an operative fetoscope, there is minimal risk to the mother. Laser therapy for TTTS has been shown to provide improved pregnancy outcomes compared to alternative therapies. Although all treatment options should be discussed with your fetal surgeon.

TTTS Resources:
TTTS Foundation
TTTS resource @ Twinstuff - written by a father of twins who survived TTTS
Fetal Hope Foundation
Club Deb Radio Interview - TTTS
World TTTS Awareness Day
Matthew and Steven TTTS Walk for the Babies


Reposted from last year with minor edits


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TTTS Awareness: What you need to know

December is TTTS (Twin-to-Twin Transfusion Syndrome) Awareness month, and tomorrow is World TTTS Awareness Day. TTTS is a disease of the placenta that can affect identical twins who share one placenta. The babies themselves are healthy, the issue is with the placenta and the circulation of blood between the babies and the placenta. (More about TTTS at the bottom of the post). I have shared our experience with TTTS with our boys previously. For today I want to focus on what you can do to help.

Judy Bogdan of Club Deb interviewed Mary Slaman-Forsythe, Founder and President of the Twin to Twin Transfusion Syndrome Foundation. Judy emailed me and asked if I would share her interview here to help get the word out, and I am honored to do so. Her family has been touched by TTTS as well, in a heartbreaking way, as her niece lost one of her twins due to this condition.

You can listen to the interview here. It's very informative, but also very personal as Mary Slaman-Forsythe shares her own experience and how the TTTS Foundation came to be started. One of the things I really liked was suggestions on how to help inform moms who may be pregnant with multiples. As Judy mentioned, it's hard to know how to bring up TTTS for fear of scaring a pregnant mom, but Mary suggested a way to share the information in a non-threatening way by simply asking them if there is one placenta or two. That way, it will hopefully get them to follow up with their doctor to find out if they don't already know, and that is one of the most important questions to answer in assessing risk for TTTS.

Why is that so important? TTTS only occurs in identical twins with a shared, monochorionic placenta. Monochorionic means one placenta and one outer sac, and there can be either one or two inner (amniotic) sacs. Twin pregnancies can be any of the following:

Dichorionic / diamniotic (two placentas, two amniotic sacs)
Monochorionic / diamniotic (one placenta, two amniotic sacs)
Monochorionic / monoamniotic (one placenta, one amniotic sac)

Once it is determined that there is only one placenta, extra precautions can be taken to monitor the pregnancy and watch for any potential issues.

From the TTTS Foundation website, here are the 15 most important questions for parents expecting twins to get answers to:

Confirm at First Ultrasound (Hopefully by 12 Weeks)
1. Is the placenta monochorionic?
2. Are the babies the same sex?
3. Can you see the dividing membrane?
4. Is the placenta anterior or posterior?
5. Do the cords have 3 vessels or 2?
6. Are the cords fully attached to the placenta?

Ask at Weekly Ultrasounds (Starting at Week 16 to Delivery)
7. What is the largest vertical pocket of fluid for each baby?
8. Can you see the bladder of the donor baby?
9. What are the weights of the babies in grams? (every 2-3 weeks)
10. Are the dopplers normal for both babies?
11. Is the heart of the recipient baby enlarged or thickened?
12. Does the recipient baby have hydrops?
13. What is the measurement of your cervix, is it long and
closed or thinning or dilated?
14. Is the smaller baby growing at the same rate?
15. What is the fundal height?

And for those who may not be familiar with TTTS, here is an overview, also from the TTTS Foundation website:

What is TTTS?
-Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.

-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.

-The common placenta may also be shared unequally by the twins

-The events in pregnancy that lead to TTTS are all random.

-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.

-TTTS can happen to anyone.

And from the Fetal Hope Foundation website:

TTTS or Twin-to-Twin Transfusion Syndrome is a disease of the placenta. It affects pregnancies with monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby, the recipient twin, gets too much blood overloading his or her cardiovascular system, and may die from heart failure. The other baby, the donor twin or stuck twin, does not get enough blood and may die from severe anemia. Left untreated, mortality rates near 100%.

The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor) to the other twin (the recipient). The donor twin develops oligohydramnios (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydramnios (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, and/or preterm (early) labor leading to miscarriage of the entire pregnancy.

Some general treatment approaches consist of using laser energy to seal off the blood vessels that shunt blood between the fetuses. Because the surgical approach is via an operative fetoscope, there is minimal risk to the mother. Laser therapy for TTTS has been shown to provide improved pregnancy outcomes compared to alternative therapies. Although all treatment options should be discussed with your fetal surgeon.

TTTS Resources:
TTTS Foundation
TTTS resource @ Twinstuff - written by a father of twins who survived TTTS
Fetal Hope Foundation
Club Deb Radio Interview - TTTS
World TTTS Awareness Day
Matthew and Steven TTTS Walk for the Babies





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Dec 7th is World TTTS Awareness day

Today is World TTTS (Twin to Twin Transfusion Syndrome) Awareness day, and December is TTTS Awareness month. If you've been reading my blog for a while, you may recall that our twins, Cuddlebug and Bearhug, are TTTS survivors. From what I have read, diagnosis and treatment has improved considerably since I was pregnant with our twins 8 years ago. Still, awareness is crucial to helping women who are pregnant with multiples get the information they need and for their doctors to be on the lookout for possible signs of TTTS. It is a life-threatening condition so the earlier it can be detected and treatment options evaluated, the better.

What is Twin to Twin Transfusion Syndrome?

TTTS is a disease of the placenta that affects identical twins who share a placenta. It occurs when the shared placenta contains abnormal blood vessels connecting the two babies, and results in one baby (the "recipient") receiving too much blood / nutrients, while the other baby (the "donor") receives too little. Cuddlebug was our "donor" twin and Bearhug was our "recipient," which is why Bearhug was red and bigger at birth, with his heart struggling to pump because his blood was thick like syrup. Cuddlebug was pale, smaller, and anemic, with his body struggling to make its own red blood cells to make up for the shortage. Our boys were not diagnosed with TTTS until delivery, which thankfully was early because I had developed pre-eclampsia. Despite the complications of prematurity, their early delivery saved their lives, because it's unlikely they could have survived much longer in the womb.

A little primer on twinning

In order to better understand how TTTS happens, it helps to understand how twins develop. Fraternal (dizygotic) twins occur when two eggs are fertilized by two sperm. Fraternal twins have two sacs and two placentas.

Identical (monozygotic) twins occur when a single egg is fertilized by a single sperm, and then during early cell division, the embryo splits an extra time to create two genetically identical embryos. If the split occurs before day 4, the twins will have separate sacs and placentas, just like fraternal twins. If the split occurs between days 4 - 8, the twins will share an outer sac and a placenta, but will have separate inner sacs (monochorionic/diamniotic). That was the case with our boys. If the split occurs between days 8 - 12, they will share both an inner and outer sac (monochorionic/monoamniotic) and a placenta. A split occurring after day 12 generally results in conjoined twins.

I heard it explained once as the later the split, the more "connected" the twins will be, and essentially babies are at risk for TTTS when they are "connected" at the placenta.

If you are pregnant

TTTS can happen to anyone. It is essential to have an ultrasound within the first 3 months of pregnancy to determine whether you are carrying multiples and if so, whether they share a placenta and inner/outer sac. That way, extra monitoring can be started early if you are carrying multiples who are at risk for TTTS.

If you are carrying multiples who are at risk, it's important to know that there is hope! Even with a shared placenta, there may not necessarily be uneven distribution of blood and nutrients. Monitoring is critical to help catch any potential problems as early as possible. If signs begin to appear that there may be a problem, there are treatment options available that have been successful for many babies.

For more information

World TTTS Awareness Day
TTTS Foundation
Fetal Hope Foundation
TTTS Awareness Day - News Release
TTTS Foundation - Fact Sheet

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Finding Courage through Sharing - Aug 2008

The topic for this month is memories and memory markers. Share about something that trips a memory in your journey with your child or children, or just a memory that is special to you. The memory can be happy, sad, or anything in between. If you don’t have time to write specifically for this prompt, feel free to share a post that matters to you from your archives. I’m looking forward to seeing what you have to share this month…

Michelle's post about her family's NICU experience got me thinking about our NICU experience. Our twins were born prematurely and were diagnosed with Twin-to-Twin Transfusion Syndrome. I wrote a series of posts about our experience a couple of months ago. Since the topic for today is memories, here is a glimpse of the experience in pictures.

This is a card that the NICU nurses made for me the morning after the boys were born (they were born at night). It meant so much to me that they took the time to do this, I am crying just thinking about it. I spent most of that day alone in my hospital room, as dh was in the NICU with the boys (where he should be!). I was unable to get out of bed for 24 hrs, so I couldn't visit them in the NICU. These are the only pictures we have of them from that first day.

Here is a chart the nurses put up on Cuddlebug's crib, I'm not sure why they didn't do one for Bearhug. I loved how it described him as a person, with his likes and dislikes. I enjoyed doing Kangaroo care with both of the boys when they were stable enough for it.

We didn't really start taking pictures until they were 9 days old. By that point, Bearhug was off of the CPAP and Cuddlebug was out of the isolette, they were able to co-bed, and we were able to hold them both. Here is our first family picture, along with each of us holding them. They were still attached to monitors and had feeding tubes, so we had a lot of "equipment" around but at least we could hold them :).

They spent their first Father's Day in the NICU, so the nurses made these cards for dh with their little handprints / footprints. Aren't they cute?

Here are a few more picture of the boys. The little orange tubes are their feeding tubes. They used to like to work their arms out of their blankies and pull out each other's feeding tubes, talk about teamwork LOL. I like how in this one, you can see Bearhug's little toes sticking out from his blankie :).

A close-up of their precious little faces. That's Bearhug on the left and Cuddlebug on the right.

Here you can see the little stuffed tigers we got to keep them company in the crib :). Those are appx beanie baby size, so that gives some perspective on how little the boys were.

These are the things I thought about when the boys have gone through their some of their more difficult times. Whenever I started to feel overwhelmed with trying to help our boys overcome the challenges that are part of autism, I thought about how they came into the world. Given the survival odds for babies with TTTS at the time, the fact that they are with us is nothing short of a miracle. Two miracles :). (And 3 1/2 yrs later - a third miracle!) When I thought of that, my feelings of despair would quickly turn to gratitude, and I felt immeasurably blessed to even have the chance to go through these challenges with my boys, because we very nearly did not have that opportunity.

TTTS is a disease of the placenta that affects identical twins with a shared placenta, in which abnormal blood vessels connecting the two babies develop in the placenta. When this happens, blood flows out of one baby and into the other, which if left untreated is life-threatening for both twins. In our case, the boys weren't diagnosed until delivery. They were born with >25% size difference, with Cuddlebug weighing 4 lbs 1 oz (he was the "donor twin") and Bearhug weighing 5 lbs 8 oz (he was the "recipient twin"). (back to top)

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Beyond Ordinary: What has autism done for us?

The phrase "beyond ordinary" is a good description of our life as parents from the beginning of our journey. Our twins were born 6 1/2 weeks early and were diagnosed at delivery with Twin to Twin Transfusion Syndrome (TTTS). They had medical issues in the beginning as a result of both TTTS and prematurity, so they spent their first 22 days in the NICU.

The first year was a blur of sleep deprivation, double feedings, double diapers and double cuddles, but as first time parents, we didn't know any different! At age 3, BH and CB were diagnosed with autism and sensory integration disorder. At that point, I was pregnant with Little Bitty. He was diagnosed with autism & sensory issues at age 2.

The world of autism is all we know, or as someone else at 5MFSN recently put it, this is our normal. So for today I want to revisit the question, "What has autism done for you?" I posted about this a while back, but I'd like to share my thoughts again here.

- Autism has taught me that things aren't always what they seem, appearances can be deceiving
- It has taught me to look for the best in people
- It has taught me to appreciate every accomplishment, no matter how "small"
- It has helped me understand what is truly important in life
- It has taught me patience beyond what I thought I'd be capable of
- It has taught me to laugh, to find the humor in things because it helps me hang on to a shred of sanity when I've about lost it(ok, I'll admit it's debatable whether I even have a shred of sanity left anymore, lol)
- It has taught me how to be strong and advocate for my children
- It has helped me stay in shape (must be able to chase a running child at any moment, carry a kicking / screaming child from store to car without breaking my back, wrestle an uncooperative child into his carseat, you get the idea)
- It has taught me how to survive on very little sleep
- It has brought some amazing people into my life that I wouldn't have known otherwise

My boys have taught me:
- how to be more observant and to notice the beauty all around us in the world
- flapping and bouncing are actually great stress-relievers :) (go ahead, try it!)
- new ways to communicate
- if something doesn't work the first time, "try it again!" with a positive attitude (they never give up!)
- how to be yourself without caring what others think
- kindness doesn't necessarily require great social skills
- there's more than one way to say "I love you" and it doesn't always require words

My sons see the wonder all around us in the simplest of things, and they notice all the little details that most of us overlook. They see people for who they are inside and place no importance on the superficial things that so many people get caught up with. They truly see the world, and everyone in it, through God's eyes. They are extraordinary, and who would want to change that?

Read more Beyond Ordinary experiences at 5 Minutes for Special Needs.

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Seven years ago today... (part 6)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, Bearhug and Cuddlebug were finally able to co-bed in the same crib together in the NICU. They seemed much happier to finally be together again. They both still had their feeding tubes in... sometimes they'd get their arms out of their swaddled blankies and pull each other's feeding tubes out. Talk about working together :).

To be continued...

To learn more about TTTS, see http://www.tttsfoundation.org/
For more info on prematurity, see http://www.marchofdimes.com/

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